A little brother’s life-saving gift

After 16 years of fighting a rare, life-threatening disease, Derek Gropp finally met the organ donor who would save his life – his 3-year-old brother Christopher.

Derek was born with Kostmann Syndrome (or commonly known as Severe Congenital Neutropenia), which prevents the body from producing white blood cells critical to fighting infections and makes even a common cold or ear infection potentially fatal. The disease eventually can transform into leukemia, and his family knew that Derek may need a bone marrow transplant someday.

Then along came Christopher, who proved to be nearly a perfect match for his big brother. But the case presented unique challenges because at just 40 pounds, preschooler Christopher was nearly a third the size of his 16-year-old, 150-pound brother.

“We have had donors as young as Christopher but the recipient is usually another child close in age or size,” says Dr. Sung Won Choi, a pediatric hematologist-oncologist at University of Michigan’s C.S. Mott Children’s Hospital where Derek receives his care.

“What’s incredible about this story is that bone marrow was donated from a 3-year-old to a 16-year-old. In order to give Derek a bone marrow transplant, we essentially had to take out Christopher’s entire blood volume.”

Since Derek’s diagnosis at age one, the family has been making the 900-mile trek from their home in Kansas for care with the immuno-hematology team at C.S. Mott Children’s Hospital. Derek’s care was overseen by several Mott specialists from five states away, including pediatric hematologist-oncologist Dr. Laurence Boxer. In 2014, the family temporarily moved to Ann Arbor for regular appointments in preparation for the transplant.

“Because of the size difference between them, not many centers may have done the transplant,” the boys’ mother Lisa Gropp, of Salina, Kansas, says. “Other places would likely have told us to wait for another match from a donor we didn’t know to avoid the risks.

“The fact that the Mott team was willing to do this transplant speaks volumes for what brilliance Derek’s doctors brought to the table, along with confidence and knowledge to be able to make these life-changing decisions for my children.”

Earlier this year, the Mott team used a bone marrow growth factor to stimulate white blood cell production in Christopher. Doctors had planned to freeze the bone marrow cells, expecting to need possibly two rounds to collect the amount of cells Derek needed. But Christopher proved to be a “fountain of marrow,” providing more than enough marrow on the first try.

Then, last month, Derek underwent the nearly five-hour long infusion to replace his bone marrow with healthy cells from his baby brother.

Lisa Gropp says when Derek was diagnosed she was told he may not live past the age of four and he has been in and out of the hospital and on medications since he was a baby. Today, thanks to his brother’s gift, his body shows no signs of ever having Kostmann Syndrome.

“A bone marrow transplant was Derek’s only chance of a cure. Without it he would die,” Lisa Gropp says. “He’s too young to understand it now, but Christopher will grow up knowing he was our greatest gift. He saved his brother’s life. He turned out to be our little hero.”

More than 3,000 people in Michigan currently are waiting for an organ, with a national waiting list of close to 125,000 people, according to Gift of Life Michigan.

National Donate Life Month is recognized in April to help encourage Americans to register as organ, eye and tissue donors and to celebrate those who have saved lives through organ donation. To sign up as an organ donor through U-M, visit www.wolverinesforlife.org, and click on “Gift of Life.”

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